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Posts Tagged ‘rsd/crps’

Knock, Knock

Hello?

Knock, Knock….

Is there still anyone out there?

As you can tell from the last post (from back in October), my life has been turned upside down.  It’s now been 6 months….6 long scary months since we last visited.

And not a lot has changed, except for one big thing.

We are moving.

To Virginia.

See that little red “A” marker on the map below.  Yep, that’s where we’re moving.

Man, that’s a long ways away for this Okie…whose never lived farther than 5 hours from her Momma.

But when your in the ministry…you go where God has called you.

And you get this really strange peace about it.

Oh, I’ve shed my fair share of tears.  And I’m not done.  We are moving away from blood family.  We are moving away from our Crossroads family.  It’s scary and exciting all at the same time.

There’s lots more to share, but my foot can only handle being away from it’s pillow and heating blanket for so long.

So I’ll be updating a little more frequently.  I can’t express how deeply sad I am that I can no longer bake and cook like I used to.  I can barely stand up long enough to fix ramen noodles.  But I think there’s more out there that I can share about, right?  Right!!  And I’ve still got all my other recipes from last year.  I may even just blog about the recipes I never got around to sharing, even though I can’t make them anymore.

Man, I’ve missed you guys!!

Shara

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Communication

I do think I’m going to put this blog on hold for awhile.  I re-read my post from yesterday and it sounded pretty bleak. This is disease is so hard to understand and I’m having a terrible time trying to put into words.

I’m NOT going to cave in to this disease.  I’m not throwing in the towel.  I AM fighting this disease.  I’ve just spent the last month trying to figure out what direction to take.  I went to Cohoon Kineseology this morning and feel pleased with the aproach that Dr. Cohoon is taking.  I went and saw Dr. Fan, my pain management doctor, this afternoon and he said that since we’ve exhausted the simpler approaches, we’ll go to the next level.  I’ve got a sympathetic nerve block scheduled for Monday.  And I’ll have follow up blocks after that.  So this is my next step.  This is my next punch at RSD.

Just so that everything is clear…my kids are being fed and taken care of.  I have to run everything from my command post, other wise known as my bed, but I’m still in charge!  lol  Mike has been awesome at buying groceries and cleaning house, and we are fine.  I don’t fix meals like I used to, and I don’t bake anymore, but the necessities are being taken care of.  I’m still holding on to the hope that I’ll have a better quality of life soon.

Until then, I’ll say good bye….for now. 😀

You can always still stay in touch through Facebook!  I’m on there all.the.time! LOL

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I’m sorry

Dear faithful followers – I’m really sorry it’s been a month since my last post.  The last month has been just been a blur of trying to figure out this new disease.  I’ve had lots of really bad days. I’ve been floundering…in all areas of my life.  It’s been a struggle with my kids, with my medications, with constant terrible pain.  And I basically didn’t want to bore you or frustrate you with my constant babble of how I’m dealing with my pain every single day.  It really is the same thing every day.

  • Wake up – take a pain pill (and all my other meds)
  • Have some breakfast with Clark
  • Get back in my bed with my favorite pillow for my foot and heating pad
  • Fall asleep while Clark is watching cartoons
  • Wake up and fix some lunch for me and Clark
  • Take another pain pill
  • Watch Grey’s Anatomy or fall asleep again or try to do some kind of hand work (like crotcheting or cross stitching)
  • Kids come home and start to worry about dinner (b/c I can’t cook anymore)
  • Fix them macaroni and cheese or breakfast food, again
  • Take another pain pill
  • Have kids get ready for bed
  • Take my night time meds

This is my schedule…every single day.

I just don’t feel like I have much to share anymore.  Before all this happened, I had my baking to inspire me and to share with you, but I can’t do that anymore and I just don’t know what to share with you anymore.

So I’m not saying good bye

…because I don’t want this to be the end.

But this blog will definitely, actually already is, different, and I’m struggling with it.  I love having this as an outlet, but, well, I don’t know.  I’m a little blank right now.

I’m praying for some inspiration, but my entire day is wrapped around the pain.


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Let’s just clarify

Let’s just clarify something first.

I just want all of you to know that I am NOT going to commit suicide. Several of you have called or sent me notes of encouragement or called Mike.  I was just in a really low place yesterday.  I worry about a lot of things and when I didn’t get the answers from my doctor and I saw the price of medication, I just lost it.  I just hit a real low.

I just wanted to clear that up.  I AM NOT GOING TO COMMIT SUICIDE.  I never could do that.

RSD sucks, and I’m just going through a mourning right now.  I’m trying to figure it all out.  I’m finally coming to the realization that this will never go away.  And so I cry.  But I cry about everything.  Most of you just never see it.

However, I do know a God that is greater than RSD.  I know that something good is going to come from all this horrible pain.  I just know it!  He is an awesome God.  And even though it’s not revealed to me right now, it will be some day.

Because I have hope.  Yesterday I couldn’t see it or feel, but today is a new day.  And a new day brings new blessings.

My blessings today:

  • Clarky came up and kissed my whole face, like about 3 time today.  He’s never done that. 😀
  • Cade and Clark didn’t have school today so I was able to rest the whole day.
  • My foot felt well enough to make a pot of pasta with marinara sauce (from a jar :D)

So I do have great things in my life.  I have things to live for, LOTS of things to live for.  I just got temporarily blinded by all the worry and pain.  And you got to experience me at my lowest.  Lucky you!!  Ha, Ha!

Looking forward to the new blessings tomorrow!

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Tryin’ to be crafty

I use a heating pad a lot for relief from my RSD.  The other night as I was trying to conform the heating pad to my foot, it just wasn’t working.  I remembered that I’d received some heatable rice bags over the years for various reasons and as I was looking for at least one of them that night, I could not find a single one.  What happened to them all?  I even had a sweet baby blue one that my friend had made for me, and it could not be found.

So I got to thinkin’…how hard would it be to make one for myself?  My biggest obstacle is that I don’t own a sewing machine, but I do know how to do simple stitching.  So the more I looked online, the more I realized that I could do this!!  The first ones I made were these:

Oddly, these look rather dirty, but I PROMISE they are clean 😀  I filled both of them with whole oats and cinnamon and then hand stitched the tops.  After popping one in the microwave for a minute…it actually stayed toasty warm for quite awhile and smelled  wonderful!  I’ve been keeping them in the freezer in between heatings.  I’m hoping it will keep the oats from getting moldy, but I’m not even sure this is necessary.

Then I made this one:

You have to use a microwaveable ziploc bag for the inside or if you have a sewing machine, you can make a smaller bag made out of some material for the rice and then make this washcloth bag for the outside.  (i used a ziploc).  I took two washcloths and hand stitched all around the outside except for one side.  Then I placed the rice bag inside, fold over the top and finished sewing it up.  A sewing machine would have made this a really quick fun project, but such as it is…I’ve enjoyed the hand stitching, too.  There was a time in my life that I did cross stitching….and someday I’ll do it again 😀

My new lil’ rice pillow has been working wonderfully!  I pop it in the microwave for a couple of minutes and I have heat for at least an hour.  And I love the way that it conforms to my foot.  The material is nice and soft….important for RSD!

The kids were sooooo impressed by my “skills” that I’m now working on one for each of them.  Here’s the one I’ve started for Reagan:

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Holding on to Hope

Oh, Friends…I’ve been so out of the loop the last couple of weeks.  So far out that I can’t even see the loop, but I’m finally starting to search for it, at least.  I’m sorry if I’ve left you hanging, but if you’re on Facebook, you’ve probably seen my statuses and know a little bit.  I do want to start posting some recipes again, but I’m not making any big promises.  It hurts to stand up and walk on this crazy foot for long periods of time.  I’ve just not had a big desire to do any baking or cooking.  I was able to make some Snickerdoodles, per my oldest babies’ request; and some of my Oatmeal Bars for a service project for Mike, and Pasta Salad (for me!).  We’ve been eating a whole lot of sandwhiches lately….lol And I’ve been really enjoying these little tomatoes from my “garden“.

I had my appointment with Dr Fan and the prognosis was hopeful. He gave me scripts for amitriptyline (an antidepressant to help me sleep) and oxycodone to help with the pain during the day. He also had me get blood work done to check my vitamin D levels and ordered physical therapy. He predicts I’ll be walking without a limp in a month! Yeah!!! I’ve been limping for 3 months now and I actually had a dream a few weeks ago about walking without pain. Sad but true.

The amitriptyline knocked me out cold.  For like, an entire day.  Actually, two days because I thought the first night was just a fluke, so I took it another night and I was out again most of the next day. Not so great since I’m a stay at home mommy….ugh.   I’ve since then, cut the pills in half and have had a lot better luck with sleeping at night (and getting up the next day…lol)

The oxycodone is wonderful…kinda.    It keeps the pain down, but makes me drowsy.  I’m looking forward to the day when I can stop taking them (I hope!!)

My vitamin D levels came back really low.  The nurse told me that normal range for vitamin D levels are anywhere between 32 and 100.  Mine was 20.  I just take one pill a week, so it’s hard to tell at this point how much it’s helping.  Again…holding on to hope.

I started Physical Therapy last week, and I’m not gonna lie:  it was a tough week.  It hurts.  a lot.  And last Friday and yesterday (Saturday) were the worst.  I had terrible stabbing pain…and I cried.  a lot.

I cried because it hurt.

I cried because I feel bad for my husband. (He wants to do something and there’s nothing to do)

I cried because I feel bad for my kiddos. (They’ve lost most of their summer to a sick mommy)

I cried because I wished I was a little girl again so my momma could make it all better with a hug and a kiss.

But then I’d finally give up and take the oxycodone and feel a little normal again.

This RSD journey I’m on is a tough one.  Man, is it tough….

But I know that God has a purpose in all of it and I’m hanging on to His Hope.

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It’s been a long week already.  Mike left for Discovery Camp (camp for Jr/Sr High students) on Sunday and won’t be back until Friday.  I’m sorry I haven’t blogged as often this week.  Honestly, all I can think about is my new diagnosis of RSD/CRPS.  It’s all I feel all day long.  I just don’t want people to feel sorry for me.  I don’t want to be a whiner about it (though there are moments that it’s all I can do to not cry).  Dr. David Paine was able to get me an appointment to see a world-reknown pain management specialist that has his practice here in Hutchison.  His name is Dr. Fan and he’s from China.  My appointment is tomorrow morning.  I’m a little nervous but hopeful.  Mike thought it would be a good idea to write down all the symptoms I’m having and maybe some questions I’ll have for Dr. Fan tomorrow.  Here’s the list of the symptoms I came up with:

  • overall aching pain in foot and up my shin/calf
  • tingling in foot and shin/calf
  • burning sensation in foot
  • twitching/spasms
  • tightness in muscles
  • limited mobility in toes
  • temperature of foot is ice-cold
  • small amount of swelling
  • occasionally my foot turns red
  • can only handle the feeling of soft blanket or pillow.  Shoes or pants or shoes or rough material is irritating and sometimes painful.
  • water from the shower stings

As you can see…it’s strange and painful.  I don’t have any options for pain management besides lortab at this point.  I hate having to take it because I end up falling asleep…not so great with 3 kiddos at home.  But because of dealing with this, I haven’t had a whole lot of creativity as far as cooking and baking.  I was able to make some chocolate chip cookies, Toasted Deli MeltsPizza, and Pioneer Woman‘s Edna Mae’s Sour Cream Pancakes this week.  I’ve also made a ton, A TON, of scrambled eggs with cheese….lol

I’ve looked all over Ree Drummond’s (The Pioneer Woman) website for this recipe (it’s in her cookbook, if you have it) and haven’t found it, so I’ll go ahead and post it on here.  Just know it didn’t come from me 😀  Reagan told me these were the best pancakes she’d ever eaten!

Edna Mae’s Sour Cream Pancakes

  • 1 c sour cream
  • 7 Tbsp flour
  • 1 Tbsp sugar
  • 1 tsp baking soda
  • 1/2 tsp salt
  • 2 eggs
  • 1/2 tsp vanilla
  • favorite pancake toppings

Heat your skillet to medium-high heat.  In a medium bowl, mix sour cream, flour, sugar, baking soda, and salt.  In a small bowl, whisk together eggs and vanilla.  Add to sour cream mixture and stir gently.  Butter your skillet (or spray with cooking spray).  Pour about 1/4 c batter for each pancake.  Cook for about one minute or until bubbles start to form on top.  Flip over and cook for another 45 seconds to 1 minute.  Repeat process until all batter is gone.  Top with your favorite toppings.

Disclaimer:  **This is not my picture**  We ate all of the pancakes before I could take a picture 😀

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